I hope someone here can shed some light for me as I just keep being told by Doctors to "not worry and wait for the next test/evaluation."
In November my 4 year old sons' pre-scool teacher approached me and said she thought my son has sensory based motor disorder. Not ever hearing of it I took my son to his pediatrcian to see what he thought. The peds Dr suggested I take my son to a neurologist. And gave me a script for OT and ST. My son now does OT/ST once a week since december.
We went to the neurologist January 9 and there they did a 45 minute EEG, which resulted in being abnormal. The neurologist ordered for me to take my son for a 24 hour EEG, video monitored. That too came back abnormal and said his brain waves spikes when he sleeps. They said he is not having seizures, but is suseptial to start so he now takes 3mL of Trileptal 2x a day. I disagree and think he was having petit mal seizures because he spaces out A LOT throughout the day.
Last week we went for an MRI and the results came back as flair in white matter with remote insult. The neurologist RN said this could be due to my sons birth defect of injury, but he doesn't have either one. I asked what this meas and all I was told was "not to worry" and that the neurologist would probably do a metabolic workup at our follow up in May. They did bloodwork and both his chromosomes and thyroid are fine.
This Friday we go for his neuro psy evaluation to get his exact Dx, and right now his Dx is ASD.
Though my son didn't start talking until he was 3 and a half, he developed normally as a baby. He NEVER threw a tantrum until almost 4, when it seemed a switch went off and he became a different kid completely.
Can anyone help please?
This probably has to be the most difficult and emotionally draining time in my life and I just keep being told "not to worry" and "be patient."
I don't think being patient is the right call here. Continue actively pursuing any medical issues your son might have and make sure he is receiving high-quality educational services as well. In a sense, his particular diagnosis (whether it be an ASD or not) is much less relevant than the particular educational challenges that he is facing. As he transitions into school make sure that he has an IEP and that the school system is providing services to address his needs. The physiological issues might be out of your control but making sure that he gets the help he needs to maximize his learning and potential are not. The sooner early, intensive behavioral intervention begins the better the prognosis for long-term success.
Did you ever get him tested for autism... my son did the same as your... everything seemed like normal then he just stopped... my son started to try to speak at an early age then just stopped... he no longer played with his toys, instead he would just line them up... he zones out alot to and its like he is in his own little world... motor fine motor skills became a problem and he began to have problems with ocd type tendencies. It was like a light went off... we got him evaluated and found out that he was autistic... you might want to check into getting him evaluated... good luck and hope this helped some
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